Tuesday, March 6, 2012

Our family has been in Virginia now for four months. Finally, things are starting to settle and feel more ‘familiar’. It really helps to see our friends, who have accepted our bizarre situation and are as expected, VERY supportive. Wrenn’s doctors are great and we of course keep in close touch with our St. Louis team, nurse friends and surgeons when needed.

So far, knock on wood, we have had a GREAT four months into this flu season even though it started late. Wrenn receives an RSV shot once a month (in both legs, and it’s very painful to watch) and will continue to get those shots during flu/RSV season (generally October-April) until age three. She got her booster flu shot in late December. The Transplant Team recommends she gets two flu shots per year because it’s not really known how long the vaccination actually lasts. (Something to keep in mind if you get your shot really early in the season).

Tanner has had to adjust to so much but after being near our family, friends and having more space to run around, he’s doing really well! He was evaluated by a top notch doctor here in Virginia to see if he needed any type of services, such as speech, PT, etc. What we found is that he’s very bright and tested at the 9-10 year levels on many tests. The doctor said his ONLY concern for Tanner was the social skills he’ll lack due to the inability to be in a daycare/preschool type environment. I told the doctor today I couldn’t tell him if Tanner would be homeschooled or not. If I had to decide today, he would be. But luckily I have another year or so to figure it all out. The town in which we will be living will make a big difference and so will other factors, like how Wrenn’s doing and her risk to exposed germs. As always, the bottom line is that we have to be able to LIVE with the choices we make for our family. We have very hard decisions to make but have to do what is best for everyone.

Tanner is a VERY good big brother. If Wrenn knocks him upside the head with a toy he takes the toy and puts it in a place she can’t reach and says, ‘NO Wrenn’ in his mousy little voice. He brings me her diapers, bottles, toys, throws diapers away, gives her hugs and kisses, plays with her, tickles her, chases her, hides from her and just loves her like he should. I have started to talk to him more about Wrenn’s situation in kid talk but I’m not sure how much he really gets. It’s more about, WHY he can’t push her down if she pushes HIM down kind of a talk; nothing about her diagnosis or future. He continues every night to say a prayer for Wrenn, the prayer that God has heard since she was born: “God, please heal Wrenn’s lungs, thank you, APEN. (Yes, he’s always said, APEN) J God understands.

Wrenn, however, is such a little attention getter. I don’t know if this is typical of a hospital kid but Wrenn constantly DEMANDS attention. She is VERY jealous of any attention given to Tanner and has quite the temper when she gets mad. (This is the fight inside that kept her going those first 8 months).

The other day she was playing around the dishwasher, opening and closing the door, and then she fell and the lower lip came out and she then threw two plastic baby cups at it and I know cussed it out in baby talk. I laughed so hard I was sorry I didn’t get it on video—it was the cutest pouty temper I’ve ever witnessed and she for sure takes after her great grandmas. J

Wrenn is an excellent communicator. She makes up her own signs if we don’t come up with one fast enough. She makes sure you know what she wants for ALL requests. She is slow in speech but I’m guessing things will work when they are supposed to, just as they did with Tanner. He took it all in and then one day had a conversation. As always, in Wrenn time.

Wrenn has progressed amazingly with eating. We figured out finally that she is drinking between 200-350 mls a day on her own through a straw. This is HUGE and so we were able to take one of her G-Tube feeds away. Because she drinks throughout the day, she is hungrier. Her favorite foods are eggs, blueberries (really likes blueberries, have I mentioned blueberries?), Froot Loops, anything Italian, cucumbers, and believe it or not, anything associated with salads including lettuce. She eats with a fork and a spoon and climbs up the pantry, then points or retrieves what she wants. Routinely, she asks for either a marshmallow or M & M after finishing a meal (it’s her sugar fix).

For play time she prefers either Tanner’s Transformer toys or super girly toys. This morning she was running around the house in her pink pom-pom boots, while flying around Tanner’s toy with flying noises. It was the cutest thing ever. She claps at anything where people do something from beginning to end and loves Sesame Street and Dora. She’s obsessed with shoes/boots and wears them all the time, preferably with just a shirt and a diaper. I can’t turn my head for one second or she’s climbing a chair, reaching into a cupboard, or about to throw dishes. Her favorite activity: LEAPING head first from the couch to the ottoman full force. The leaping gives my parents heart attacks when they babysit but there’s honestly no holding her back. She is something!

Wrenn continues to amaze the doctors with her progress both socially, physically and mentally. She is so lucky to be doing so well. Her oxygen saturations are 100 even at the doctor’s office and since she’s eating better, her coloring is beautiful. She has plump pink cheeks but holds on to those little chicken legs I love so much and trust me, they can run REALLY fast after snatching one of Tanner’s toys!!

We still get labs drawn at least once a month (sometimes 2 or more times if needed) but she does pretty well. The nurse we work with is excellent and that’s always half the battle, getting it the FIRST stick. I call ahead and make sure she’s there or we don’t go. The lab is associated with VCU/MCV and I don’t know why, but I’ve never seen another soul in there. This is GREAT because if you’ve ever been to a regular LabCorp, it’s wall to wall people.

Our next trip to St. Louis is on the 23rd-24th of April. We are hoping lung function tests come back so well on the first day that she won’t need to be put through sedation and a bronc the next day; making it a one day trip only. So far, knock on wood, she looks amazing, sounds amazing and has escaped the flu and any viruses. We’ve pretty much gone into hibernation during this late flu season but take all precautions to avoid any issues when we do go out or get near family.

The kids continue to make me smile, exhaust me and make me appreciate every day I have with them. They are a handful but bring us so much joy. Some days I’ll watch Jason hold Wrenn while she’s sleeping and he’ll have that look in his eye and I don’t even have to ask that he’s worried he’ll lose her one day. We both well up with tears without saying a word because we can’t imagine our lives without her. I pray every day that the genetic scientist makes a break-through in lung transplants for these kids to live for several decades. I pray that God puts the right people in front of us to continue her health and longevity. ABCA3 is the 2nd most successful for transplantation. I’m hoping this holds true for Wrenn J

If there’s one thing I’ve witnessed among moms who face life-altering situations is the strength and desire they have coming out of the situation to help others. My friend Nicole founded “Fay’s Friends”. She not only talks parents through the entire process of infant transplantation but gives out beautiful bags to each transplant recipient under the age of 18 in hospitals all over the country. Her bags contain tips of the area (case in point: I knew nothing about St. Louis and her maps, ideas on where to eat, where to take Tanner, how to get around, etc. were extremely helpful!). She has gifts for Mom, gift certificates for places to eat and for grocery stores, and information on how to order supplies and tips on how best to keep medications straight. She has items for surviving hospital days and nights and gifts for the baby. (Wrenn still sleeps with her little monkey that Nicole gave us that first day in St. Louis.) Nicole’s innate desire to help others is courageous and everything in that bag was the result of a LOT of research and a ton of work. Not to mention she supports and watches everybody else go through the exact same situation she went through, which I’m sure is draining at times. The entire situation brings up so many emotions, and the photos are so similar: infants waiting for lungs; all in rough shape and super sick. I know for me, I picture Wrenn in all those photos as if it were yesterday and tears just flow for those families. What I’ve consistently noticed is that parents like Nicole Neufeld, who are beaten down from a completely caught off guard type of situation, somehow find an inner strength to come back with not only a great idea but help hundreds of other families deal with the same challenges. Not everybody has that capability to do so; her gift in helping others is priceless and has helped me on so many levels on a daily basis, I can’t even begin to tell you!

I know for me, I felt completely helpless those first three months when Wrenn was in the hospital at Winnie Palmer. Day in and day out I watched people leave the building with their little pink-cheeked babies and I wondered at one point if I could start using the back door to enter because it made my situation so much sadder. I sat in a chair for 9 months holding Wrenn, rocked her, read to her, cried for her and prayed—lots of prayers. During those hours and days I constantly worried I’d accidentally pull out her oxygen cord or kink it and of course the alarm went off when I did. But daily, those CORDS DROVE ME NUTS! I felt like I focused more on those cords some days than I did Wrenn. When she was in St. Louis waiting those last few weeks her bedroom looked like something you would see at NASA. I decided early on that something needed to be done and that I wanted to find a way to help other parents both in the hospital and at home. I already had the idea in my head on that first day that Wrenn was born… now I just had to get it on paper and so….

I started a clothing line in honor of my daughter: Special Clothing for Special Babies—Inspired by Wrenn. I guess you can say this is MY legacy for her. This to me is something I CAN control and can make a difference. My platform is to bring awareness to organ donation, the Ronald McDonald House and of course, give parents an option in clothing for their babies with special needs. I have a price point for every scenario so families in all financial situations can own a special romper. (I know all too well what it’s like to be on unemployment and COBRA during a crisis) So I offer heavily discounted prices to families who are currently in the hospital with sick babies, run periodic specials on Facebook and Twitter, have an Inspired by Wrenn Rewards program, a trade in program, a USED line for short-term usage and new rompers for grandparents who just choose to spoil. I also offer specialty rompers for just hospitals with multiple combinations and in select gift shops at hospitals. My line accommodates babies with Ostomies, Tracheotomy, Gastrostomy Buttons (Regular and Post-Surgical), Central Lines, Heart Monitors and IV tubing. If you’d like to see my site please visit: www.specialclothingforspecialbabies.com.

If you know of someone who would benefit from one of these rompers, give them a special discount code: BLOG0414.

I knew right away that a percentage of yearly profits would be donated to the Sibling Daycare Room at Children’s Hospital in St. Louis where Wrenn had her surgery. Tanner as you all know spent MANY hours there and the staff became part of our family. We would have been in so much trouble without this daycare center, which ONLY caters to inpatient siblings. The daycare was started by the nurses at Children’s and then branched out to patient families. I’ve never heard of an entity like this and I WANT to make sure it never goes away. Just being able to pay one person’s salary a year or bring in twenty new toys or enable them to expand the room when necessary brings me great joy and purpose in having this special clothing line succeed. I really wish that more hospitals had this great program available for siblings because it was an amazing blessing for our family during a VERY dark and challenging time when we weren’t surrounded with friends or family to help us with Tanner.

I’ve come to realize that when mommies are faced with challenging, heart wrenching situations, they tend to come back full force and make something great out of a not so great situation. I really don’t know how I’ve done it all to be honest. People who meet us for the first time often ask how we can look so happy with what we’re dealing with. I guess it’s because they don’t see the sad moments… the unknown future and how things can change in the blink of an eye. I guess that’s why I’ve created Inspired by Wrenn. This project makes me feel like I’m actually making a difference in the world for those parents who try so hard to feel and act normal in a situation that is anything BUT normal. As always, anytime I think that my situation is tragic, I see a more tragic scenario and thank God for my little Wrenn. She’s perfect and there was always a chance she wasn’t going to be.

Wrenn's Baby Breath Fund

Click here to DONATE through the National Transplant Assistance Fund. Any help you can give will go directly towards Wrenn's medical expenses. Thank you!

Wrenn's Story

Wrenn was born on April 14, 2010. She was a little early, but not alarmingly so, and at 18 inches long and just under six pounds she was pink and pudgy and looked to be the picture of newborn health.

Unfortunately, Wrenn quickly developed breathing difficulties and needed full-time oxygen or her little lungs would collapse. Doctors suspected that Wrenn might have a rare genetic disorder called Surfactant Protein Deficiency.

Shortly after her birth a series of tests were run, and on her one month birthday her parents found out that Wrenn does, indeed, have the incredibly rare genetic disorder known as ABCA-3 Surfactant Protein Deficiency.

Wrenn needed new lungs and in September 2010, two months after her family relocated to St. Louis, she received a double lung transplant.

This site has been created as a space for Wrenn's family to keep friends and family updated on Wrenn's progress. She's a fighter, so we expect lots of updates!

Wrenn's parents have good health insurance, but they're still going to have huge medical bills to deal with, so we hope that anyone who can will donate to Wrenn's Baby Breath Fund using the NTAF link above.